I never intended to become one of the best known patient advocates in the “baby making business”, otherwise known as the field of infertility. But my life has always been filled with the unexpected. After all, I was an ordinary kindergarten teacher who lived in the very common borough of the Bronx in NYC. I imagined a life of marriage and children – perhaps a dog. Marriage happened according to plan but I ended up with cockatoos….and infertility. And that led me to treatment and advocacy.
Well kids – it has been some ride. I ran the chapter of RESOLVE NYC – until I was almost run out on a wagon train because the chapter became too successful (that’s right…too successful) and the National Organization wanted me gone. I was a pain in their back side – it is one of my charms. And then I founded The American Infertility Association – which became The American Fertility Association where I served as the Founding Executive Director until February of 2008. Some of that time was wildly exciting for me – when I actually felt like I was changing lives – and building families. And some of my experiences in the rocky world of patient advocacy in the field of fertility also left me incredibly disappointed. But isn’t that the way with all things? There are the ups and the downs – and I am still riding them!
Is this a cut throat and overly competitive field? You betcha. There is a lot of cash and egos at stake. So if you are gonna play here…you better gird your loins. And to be honest – I am not always so good at that.
I have lived a few lifetimes in this field – and I have always been on the inside – telling people on the outside what they needed to know. I often think that I will write my own big tell all book about this field – it will be called “You Will Never Ovulate In This Town Again”. But for now – I will continue to write this blog. I try to write about what it is that I think you need to know – what the real low down is….and I talk straight…because talking straight is what I do best.
I love sharing with you my own journey – as a patient, advocate and perhaps most of all as a woman. And I am passionate about trying to help you with your journey. I hope this blog empower yous…encourages you-makes you laugh and in a virtual kind of way-holds you if you need to cry. If you want to scream – have at it. Perhaps sometimes we do that together.
I began my own infertility journey in 1986, which I might add – is a very different experience than it is now. First of all, there were not IVF centers on every corner like today. No, back then people actually waited on long waiting lists, traveled across the country and put themselves up in hotels for success rates that hovered around 20% per cycle if you were young enough and had no male factor infertility.
My son Tyler is only ten years younger than Louise Brown, the first IVF baby ever – he is one of the early IVF success stories in NYC (yes that now makes him a junior in college now) and my youngest Spencer who is 16 is one of the first babies born from a cryo preserved embryo. I watched the first IVF Centers spring up around the country…..
The evolution of patient care in this country for the fertility patient has been extraordinary. So while others may balk and complain – and yes things can always get better – I know we have come a long way baby in terms of accessibility to care – outcomes – technology and the introduction of holistic treatment to support our experience. We are finally in a place where we can begin to talk about the prevention of infertility in very real terms. Now that lights a fire in my belly. And that is new.
As I mentioned in February 2008 – I resigned my post as Executive Director of The American Fertility Association, and I spent six months walking and reflecting on the past 20 years of my work in the field. God…I really do need to write that book!!!! But as life is – I am writing another book instead that was recently purchased by Rodale Press, called “SHAMELESS” – it’s not really about the fertility industry – except that everything about me is touched in some way by the fertility industry – so you will get a glimpse of that too in SHAMELESS’s pages. Instead this is a book about female sexual awakening – and the impact that had upon all of the aspects of my life. It’s a memoir – and I hope that you will read it when it comes out. It’s yet another way for me to be bridge between the worlds of talking heads and real life people. It’s what I do best. As the book gets closer to it’s publication date in Winter 2011 – I will write more about it.
I can tell you that all in all, my tenure in the patient organization world of infertility advocacy was one of the most special times in my life. There were times when I could do exactly what needed to be done on behalf of patients – I can tell you how hard all of my staff worked and all that we accomplished – and I deeply believe in the work of patient organizations – but I also deeply believe that the way that all fertility patient organizations in this country are funded has to change. Because what is happening is that the tail is wagging the dog – not the other way around. The pressures on patient organizations in this field – are like no other – simply because fertility is a field like no other. And the patient organizations are pressured constantly by industry, physicians, pharma – all which have a stake in the big business of infertility. And no matter what – in order to survive – on one level or another – big business is being served by the patient groups – simply because the patient groups they have no choice. There is very little other funding available. It is a difficult dance for our charitable groups, and it is exhausting to dance that particular tango.
That is why I love writing this blog. In all of my twenty some odd years of patient advocacy – I have never had this freedom in speaking my mind. Because outside of Dr. Kreiner at East Coast Fertility – I report to no one for the first time in my professional life. And have you read his blog The Fertility Doc? If you haven’t – you should. Dr. Kreiner is as outspoken as I am – and is willing to say what is not popular. Frankly – he rocks.
When I left The AFA – I decided I needed to stay in this field – but I didn’t want to start another patient organization.. For me, those days were over. I wanted to go to work directly for someone in the field. I wanted to be able to do what I felt needed to be done for the women in this country – which was to talk honestly about fertility and sexuality – and educate OB/GYNs who are the gate keepers. Dr. Kreiner and this blog – have given me that chance to continue my work. For that I am so deeply grateful.
This dog is now wagging her own tail. And I am getting out there every day – speaking out for people with infertility and campaigning for fertility education and calling a spade and spade.
For me – it is surprisingly the same work I have always wanted to do, except that I am on the ground in the trenches in a way that I have not been in a long time. I am often in gyn offices and I get to speak one-on-one with my doctors about the short fall of information for women. I am still talking to the media. But now I am reaching out in ways that I could only have imagined when working as a patient advocate in the confines of a patient organization.
It’s a new world. It’s the same world. And I love being here every day talking about all of it. My readership just hit a peek of 7000 readers a month. I want to thank you for jacking in – for being so supportive – for re-posting my blogs and telling others about it. I am incredibly grateful for this opportunity to keep doing what I do – and every now and then – it feels so good to say thank you!